Re: just to say

[Guest guest]

I don’t always feel so much of a joy, and seems the one I live w is blind, or it’s just I’m a different person when I hop off this chair?!?! (Not!) - it’s just frustrating when I’m not up to going for a walk etc, doesn’t comprehend the up days and then down again – my own family couldn’t, still can’t, so who can??A sometimes not so joyful Joy

Unlike so many others, I was so lucky to have had my health while raising my 4 kids. My family remembers the strong mom..the one who could run up and down two flights of stairs carrying a full load of fresh, folded laundry. Who could chase one of the kids around the yard, playing kickball..who could roll and romp and laugh in the green grass..play marco polo in the river..

Lung disease of any sort is a killer..a slow killer..a painfully slow killer..I was 35 when I first became symptomatic ..yet still functionable. I didn't become quite so debilitated till my late 40s..and moreso in my 50s..where I am now. I have the mind of a 30 yo..the body of a 70 yo..and what flabbergasts me is there's some 80 yo's who could dance around me !!

At one point or another, on this list, we've all echoed your frustrations, Joy. That's what this list is for..support, education and awareness..hang in there with us..we're walking side by side..

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them UpThe year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there.

[Guest guest]

Insight..

Joy..I journal..I used to journal a lot more than I do these days..but that word ' insight' reminded me of something I journaled a year or so ago..

I'd like to share this with you and the group:..and it goes..

In the 50s I considered myself this twig of a person—an ugly duckling hiding behind her Drew books, her rocking chair, and her Nanny. In the 60s I was the typical high school teen, scared to death of the "fire and brimstone" preached to me by the nuns and priests in school and the wicked third eye my mother most surely possessed. That was the fear instilled in me that kept my clothes on in the back seat of a car at a drive-in movie; that kept me a virgin until one year after I had graduated from high school. My mother, that woman who seemed to be everywhere, knew all and saw all and I was doomed. In the 70s I married and had my first child, Lela. After having married the man to whom I lost my virginity and divorced a mere three years later, I started becoming aware of the "me" inside. Slowly, cautiously I expanded my horizons, started taking dares and living life in a way that would change my life forever.

After marrying in 1979 and giving birth to three more children in the 80s—, Dennis and Jackie—my new husband and I bought a house. Thus, we became established members of society. We played the "keeping up with the ' cat-'n-mouse game." We were house poor and up to our knees in debt. I threw myself into my church, community and kids, I even taught religious education. I and my family were the epitome of middle-class America.

Lela, being my oldest child and from a previous marriage, was fifteen years older than her youngest sibling, Jackie. I fondly remember, as clear as the day it happened, the time Jackie and I were playing together on my bed. I was lying there tickling and cuddling her as she jumped circles around me on the bed. One moment she exclaimed "Mommy, where's your friend today?" I asked, "Which friend honey?" Jackie replied, "Your friend, Lela, Mommy, she's nice. Can she come over and play with me?" Stunned, it suddenly occurred to me that at 23, married and with a family of her own Lela didn't live with us then. I chuckled and touched Jackie's hand, "Sweetie, Lela's my daughter. Lela's your sister, honey." Jackie, her eyes as huge as melon balls gasped, "She ISSSS?" It never occurred to me that Jackie thought of Lela as our friend and not her blood relative, how odd.

The 90s were a time of upheaval, extreme challenges, illness and more change: drastic changes along with growth and inner strength and learning—more and more learning. As I've always said, life's greatest gifts are the lessons we learn and if "ya ain't learning, then you're dead"—if not dead in the physical sense, then dead inside.

The new millennium arrived, the age of Aquarius had arisen—enlightenment, enhancement and Karma. Through these years I aged, saged, struggled, cried, fought, divorced (again) and loved, but never gave up. Diagnosed in 1998 with Alpha-1 Antitrypsin Deficiency, I thought I was just handed my death sentence,actually, not so. Today, five years later, Alpha1 isn't a big thing in my house. It's the way it is. It's a way of life. My family is very normal, as normal goes. We don't tiptoe on eggshells. If I'm having a bad breathing day, I say so and my kids are there in one sense or another to help me. If they sense I don't feel threatened, they're just fine, which doesn't mean I hide my struggles, I can't. When my kids see I'm handling things, then they're okay. We're a typical family dealing with a not-so-typical illness, but we're okay. Know what's cool? My kids think I'm okay. My son told me once, "Mom, when I grow up I wanna be just like you." He was 19 at the time.

Years ago I felt something was missing. I didn't know what I wanted to do with my life, didn't even know what my purpose in life was. Through my quest to find answers, I suddenly realized something (call it a rebirth, if you will). I've learned if your happiness is based on people approving everything you do and getting bravos for it, you're doomed to failure because it can't ever be enough. Indeed, my goal, my purpose isn't really about myself. I also came to understand and accept (and to me it rings so true) the idea of "reactive behaviors." Everything we do is reactive to something else: why we get upset, get angry, cry; why we show jealousy; why we show hurt. There's an easier way to explain this: "Don't sweat the small stuff." We shouldn't allow what others think, feel or do affect us.

A beautiful friend put it so candidly, "What you think of me is none of my business." That's it!! No one has to like us, agree with us or even has to do anything at all. The only thing necessary is just to respect us and our opinion and choice to do so, to say so. It's as simple as that. I think since I've adopted this philosophy I've become a better person inside. I've let go of the radical, outside forces that were eating me alive and I like myself now—this easy goin', laid-back person I've become.

I visited with an old-time, dear friend of mine this evening. Her hubby, , shared something awesome with me. He explained to me, "Sandie, I can tell you this and know you'll understand. No one else does or ever could. You and I share the same 'place,' so what I'm about to explain to you about how I've changed, since I was diagnosed with my chronic illness, I'm sure only you could understand in a way no one ever could. Not until they're where 'we are' now." Rog then went on to tell me how he really feels these days, "I don't care anymore, Sandie. Nothing matters. Nothing." I knew exactly what he meant, exactly. As Terry would put it, I understood "total T" what Rog was saying to me: once you're forced to face your mortality, you look at things, life, people, issues and situations in a whole different light.

Chronically ill people "transcend" to another level, rise above the day-to-day hogwash: including issues such as, who's on first and what, where and when; who did it; why did they do it; and who really cares if they did it or not, nor the reasons surrounding it. Rog went on to explain, "I live life at a slower pace now, appreciating more, taking less for granted, wanting less, needing less." As he sat there pouring his heart out to me, I began to cry. I was overwhelmed and full of amazement at this man who sat there telling my story. I too felt the same way. I just don't care, I don't give a damn, it didn't matter anymore. I no longer sweat the small stuff, I appreciate more and take less for granted. I (we) don't have time for the petty crap people create—making mountains out of molehills. I have bigger, steeper mountains to climb. I just have to take my time getting up there these days. I may not get there as fast as others, but I'll get there nonetheless. Moreover, I'll see more, touch more, feel more, appreciate more on the way up and, unlike my healthier friends and family, I'll remember more by the time I get there.

So, I understood exactly where Rog was coming from. I've let go—I've let go of the day-to-day hogwash and the pettiness. I'm not afraid to die, I'm not afraid of anything. I also shared this information with Sharon, expressing how awesome it was to hear someone else mimic my words, my thoughts, my feelings. Sharon responded that no, she didn't understand where and I were coming from. She couldn't possibly, nor can Terry nor my kids. No one can. No one other than someone else who's walking the same path and I are can understand. Only once you've faced your own mortality do you really slow down, usually forced to by the physical limitations. Having done so, the brain kicks into gear, making you face the reality of the situation and the reality of the situation is just this:

When I'm dead and gone it won't matter that I busted my buns keeping my house spit-shine clean day in and day out. It won't matter how much money I earned this month. It won't matter if I was 15 minutes late to the board meeting. It won't matter that my garden was overgrown with weeds.

What WILL matter is how many will remember me when I'm gone. More importantly, it will matter HOW they remember me. Did I take that extra two minutes to hug the ones I cherished so much in life, instead of jumping down their throats for doing something wrong? Did I make the effort to compliment or praise my child for a job well done? Did I take the time to remember to say a kind word to someone special and important in my life? Ironically, sometimes we give outsiders more praise and kindness than we do the one's closest to us.

Patience, compassion, kindness.

Too bad it takes chronic illness to jolt us sharply into the realization of just what the secrets are: life's secrets, life's answers. I believe that I'm getting closer to that realization. I went on to ask Sharon, "Can you see the light burning within you?" She remarked, "I can feel it." I asked her again "But, can you SEE it?" She looked at me, confusion on her face, " No, I don't understand, what are you seeing?" I replied:

" The light, Sharon, the light that burns from within. The light of hope. The light that motivates us. The burning light that we feel. You can see it with your third eye … it's the promise that everything's gonna be okay. Nothing matters, Sharon, because it's going to be okay. You'll be okay, Rog will be okay, our kids will be okay, Terry will be okay … nothing matters, you see.

It's out of our hands.

We're gonna be okay, one way or the other."

Never Look Down on SomeoneUnless You're Willing to Help Them UpThe year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there.

[Guest guest]

Ta Sandie,

Just ‘having a moment’ as the saying goes here. Been bit unwell, coughing really nasty gunky stuff w blood, sore throat, now gums, another abx, ... Aaaaaahh!!

But I’m alright really... Well I think so even if some don’t so there!

I have found hugely refreshing contact w people through this group, just knowing I’m not the only one, and knowing younger ones don’t have to do it alone, as so many have had to in the past – who’d ‘ve thought I would ever laud the praises of internet technology!!

This one is thankful,

Cheers to you Sandie, for your indomitable spirit, to lose so much effervescence and know what you have lost... How do family/friends understand that? Do you feel we gain too, insight? I lose it sometimes, but when you feel well, how much a treasure it is, nothing can be taken for granted w this condition..

Joy

-- --

" Sentient beings, all our very own mothers, are as limitless as space”

[Guest guest]

Sunnie,

Your message was so profound and beautiful, and so right on target. I used to journal, but can't seem to do it any more. I have always like to write and wanted to write my life story so my family will get a sense of where they come from, but probably won't now. I am printing out your words to keep.

Stay well Sunnie, I will see you someday in that better place. I totally get what you are saying.

MarilynThe year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there.

[Guest guest]

Sunnie,

Your message was so profound and beautiful, and so right on target. I used to journal, but can't seem to do it any more. I have always like to write and wanted to write my life story so my family will get a sense of where they come from, but probably won't now. I am printing out your words to keep

Marilyn !!!! you've got a wealth of information to share with those who come after you..get your story out..dont keep it bottled up inside..spread it for the world to see....

I know you can do it !

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them UpThe year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there.

[Guest guest]

Sandie,

Thanks for the encouragement. I will try. Right now extreme fatigue and weakness are my worst problems, and according to pulm idiot, I mean doc, not related to bronch. My hands and the rest of me, especially legs hurt and am hoping physical therapy will help. Also taking meds for degenerative arthritis. But just feels like my core is worn out. It has been recommended I see a neurologist and follow up with cardio doc, and I will, but just have to space out my time and energy.

MarilynThe year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there.

[Guest guest]



Sandie thanks for sharing your naked self, this is the only true way of really getting to know someone....and it sounds like you have or are becoming Ego less and getting close to the answer of your life's purpose. You're story has lots of strength, self awareness, emotion, love, and real truth.....like peeling an orange the best fruit is on the inside and yes life can be sweet or sour just like the fruit....its our choice!

Thanks, Again

Re: just to say

Insight..

Joy..I journal..I used to journal a lot more than I do these days..but that word ' insight' reminded me of something I journaled a year or so ago..

I'd like to share this with you and the group:..and it goes..

In the 50s I considered myself this twig of a person—an ugly duckling hiding behind her Drew books, her rocking chair, and her Nanny. In the 60s I was the typical high school teen, scared to death of the "fire and brimstone" preached to me by the nuns and priests in school and the wicked third eye my mother most surely possessed. That was the fear instilled in me that kept my clothes on in the back seat of a car at a drive-in movie; that kept me a virgin until one year after I had graduated from high school. My mother, that woman who seemed to be everywhere, knew all and saw all and I was doomed. In the 70s I married and had my first child, Lela. After having married the man to whom I lost my virginity and divorced a mere three years later, I started becoming aware of the "me" inside. Slowly, cautiously I expanded my horizons, started taking dares and living life in a way that would change my life forever.

After marrying in 1979 and giving birth to three more children in the 80s—, Dennis and Jackie—my new husband and I bought a house. Thus, we became established members of society. We played the "keeping up with the ' cat-'n-mouse game." We were house poor and up to our knees in debt. I threw myself into my church, community and kids, I even taught religious education. I and my family were the epitome of middle-class America.

Lela, being my oldest child and from a previous marriage, was fifteen years older than her youngest sibling, Jackie. I fondly remember, as clear as the day it happened, the time Jackie and I were playing together on my bed. I was lying there tickling and cuddling her as she jumped circles around me on the bed. One moment she exclaimed "Mommy, where's your friend today?" I asked, "Which friend honey?" Jackie replied, "Your friend, Lela, Mommy, she's nice. Can she come over and play with me?" Stunned, it suddenly occurred to me that at 23, married and with a family of her own Lela didn't live with us then. I chuckled and touched Jackie's hand, "Sweetie, Lela's my daughter. Lela's your sister, honey." Jackie, her eyes as huge as melon balls gasped, "She ISSSS?" It never occurred to me that Jackie thought of Lela as our friend and not her blood relative, how odd.

The 90s were a time of upheaval, extreme challenges, illness and more change: drastic changes along with growth and inner strength and learning—more and more learning. As I've always said, life's greatest gifts are the lessons we learn and if "ya ain't learning, then you're dead"—if not dead in the physical sense, then dead inside.

The new millennium arrived, the age of Aquarius had arisen—enlightenment, enhancement and Karma. Through these years I aged, saged, struggled, cried, fought, divorced (again) and loved, but never gave up. Diagnosed in 1998 with Alpha-1 Antitrypsin Deficiency, I thought I was just handed my death sentence,actually, not so. Today, five years later, Alpha1 isn't a big thing in my house. It's the way it is. It's a way of life. My family is very normal, as normal goes. We don't tiptoe on eggshells. If I'm having a bad breathing day, I say so and my kids are there in one sense or another to help me. If they sense I don't feel threatened, they're just fine, which doesn't mean I hide my struggles, I can't. When my kids see I'm handling things, then they're okay. We're a typical family dealing with a not-so-typical illness, but we're okay. Know what's cool? My kids think I'm okay. My son told me once, "Mom, when I grow up I wanna be just like you." He was 19 at the time.

Years ago I felt something was missing. I didn't know what I wanted to do with my life, didn't even know what my purpose in life was. Through my quest to find answers, I suddenly realized something (call it a rebirth, if you will). I've learned if your happiness is based on people approving everything you do and getting bravos for it, you're doomed to failure because it can't ever be enough. Indeed, my goal, my purpose isn't really about myself. I also came to understand and accept (and to me it rings so true) the idea of "reactive behaviors." Everything we do is reactive to something else: why we get upset, get angry, cry; why we show jealousy; why we show hurt. There's an easier way to explain this: "Don't sweat the small stuff." We shouldn't allow what others think, feel or do affect us.

A beautiful friend put it so candidly, "What you think of me is none of my business." That's it!! No one has to like us, agree with us or even has to do anything at all. The only thing necessary is just to respect us and our opinion and choice to do so, to say so. It's as simple as that. I think since I've adopted this philosophy I've become a better person inside. I've let go of the radical, outside forces that were eating me alive and I like myself now—this easy goin', laid-back person I've become.

I visited with an old-time, dear friend of mine this evening. Her hubby, , shared something awesome with me. He explained to me, "Sandie, I can tell you this and know you'll understand. No one else does or ever could. You and I share the same 'place,' so what I'm about to explain to you about how I've changed, since I was diagnosed with my chronic illness, I'm sure only you could understand in a way no one ever could. Not until they're where 'we are' now." Rog then went on to tell me how he really feels these days, "I don't care anymore, Sandie. Nothing matters. Nothing." I knew exactly what he meant, exactly. As Terry would put it, I understood "total T" what Rog was saying to me: once you're forced to face your mortality, you look at things, life, people, issues and situations in a whole different light.

Chronically ill people "transcend" to another level, rise above the day-to-day hogwash: including issues such as, who's on first and what, where and when; who did it; why did they do it; and who really cares if they did it or not, nor the reasons surrounding it. Rog went on to explain, "I live life at a slower pace now, appreciating more, taking less for granted, wanting less, needing less." As he sat there pouring his heart out to me, I began to cry. I was overwhelmed and full of amazement at this man who sat there telling my story. I too felt the same way. I just don't care, I don't give a damn, it didn't matter anymore. I no longer sweat the small stuff, I appreciate more and take less for granted. I (we) don't have time for the petty crap people create—making mountains out of molehills. I have bigger, steeper mountains to climb. I just have to take my time getting up there these days. I may not get there as fast as others, but I'll get there nonetheless. Moreover, I'll see more, touch more, feel more, appreciate more on the way up and, unlike my healthier friends and family, I'll remember more by the time I get there.

So, I understood exactly where Rog was coming from. I've let go—I've let go of the day-to-day hogwash and the pettiness. I'm not afraid to die, I'm not afraid of anything. I also shared this information with Sharon, expressing how awesome it was to hear someone else mimic my words, my thoughts, my feelings. Sharon responded that no, she didn't understand where and I were coming from. She couldn't possibly, nor can Terry nor my kids. No one can. No one other than someone else who's walking the same path and I are can understand. Only once you've faced your own mortality do you really slow down, usually forced to by the physical limitations. Having done so, the brain kicks into gear, making you face the reality of the situation and the reality of the situation is just this:

When I'm dead and gone it won't matter that I busted my buns keeping my house spit-shine clean day in and day out. It won't matter how much money I earned this month. It won't matter if I was 15 minutes late to the board meeting. It won't matter that my garden was overgrown with weeds.

What WILL matter is how many will remember me when I'm gone. More importantly, it will matter HOW they remember me. Did I take that extra two minutes to hug the ones I cherished so much in life, instead of jumping down their throats for doing something wrong? Did I make the effort to compliment or praise my child for a job well done? Did I take the time to remember to say a kind word to someone special and important in my life? Ironically, sometimes we give outsiders more praise and kindness than we do the one's closest to us.

Patience, compassion, kindness.

Too bad it takes chronic illness to jolt us sharply into the realization of just what the secrets are: life's secrets, life's answers. I believe that I'm getting closer to that realization. I went on to ask Sharon, "Can you see the light burning within you?" She remarked, "I can feel it." I asked her again "But, can you SEE it?" She looked at me, confusion on her face, " No, I don't understand, what are you seeing?" I replied:

" The light, Sharon, the light that burns from within. The light of hope. The light that motivates us. The burning light that we feel. You can see it with your third eye … it's the promise that everything's gonna be okay. Nothing matters, Sharon, because it's going to be okay. You'll be okay, Rog will be okay, our kids will be okay, Terry will be okay … nothing matters, you see.

It's out of our hands.

We're gonna be okay, one way or the other."

Never Look Down on SomeoneUnless You're Willing to Help Them Up

The year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there.

[Guest guest]

I do take a multi vitamin and extra B12 every morning for last 10 years. Also 600 mg of calcium with vitamin D at night. It helps me sleep better.

I get up at 7:30 a.m., fix girls lunches, send them off to school, clean up kitchen and then am ready for a nap. I try to go grocery shopping, take care of chores, do laundry, etc. eat lunch and then want to nap again. Just the slightest effort wears me out. RA was ruled out through a blood test at my request.

I am yet to see a neurologist and follow up with cardiologist after last spring hospital for possible pulmonary hypertension (which I don't have) and for shakiness overall.

I know I am older, 71, but know a lot of people my age who still have very active, vital lives. I just want to be in bed at 6-7 p.m. I enjoy my family, but the thought of going to a play or anything else, just wears me out.

I don't want to be a complainer, and believe me I am grateful for my life.

Best to you today and everyday,

Marilyn

Marilyn...Your schedule sounds a lot like mine..alot..your energy levels sound a lot like mine..a lot

I'm only 57..i could be your daughter..and it so bothers me to see people your age and older walking circles around me too..

you're not being a complainer..it is what it is, eh? It's so disheartening,disappointing and FRUSTRATING..we have to let it out sometime..n'est pas? That's what this list is for..to VENT..

I am also very grateful for my life..but sometimes when ya feel like a lemon..you dont want to make lemonade..you want to bitch about it..and we have every right to do that..who says we have to be polly sunshine every day? That would just be unrealistic..now wouldn't it?

Hugs

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them UpDelicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

First of all I wanted to say I know how you feel. I was first

diagnoised with this at the age of 26. I deal with infections all the

time and I get well if you think that you are sick, you will be. What a

load of crap. People, that dont have this disease dont have any idea

what it is like to live with it. Ive dealt with a Doctor who actually

made a joke of my clubbed fingers. That was the last I saw of him. I

also filed a complain on his lack of professionalisim and insesitivity

towards a patient. I doubt that it did any good. But it sure made me

feel better. But I am with you my dear. I know that this is not in

your head.

nyzki